Candy's Story: Liver and Kidney Transplant
ADPKD I had a dual transplant, both kidney and liver.
My sister and I both went through the dreaded question being asked as to when we are due because of the size of our cystic kidneys. My sister had it worse because she didn't have her native kidneys taken out until years after her kidney transplant, where I had one taken out right before, and the second native kidney removed a year later. When my cystic liver grew, I went through the same thing all over again. I just said, " Oh, I'm not pregnant, I have a liver/kidney disease. " They are really sorry usually, and I talk to them about the disease to educate people a little. I know everyone isn't comfortable talking about their private business, but I lost my father at 12 years old from PKD and I can never bring him back, so I continue to talk about Polycystic Disease.
Chlorine in the bath and shower water is something I try to avoid. I bought one of the filters for my shower head to help with that. If you have an enclosed bath, you can then use the shower water to fill the bath, I suppose. I don't really take baths often but that is what I'd do. Maybe they have some kind of filter for a faucet. I live in Ohio which is quite a way from the Mayo clinic. Dr. Torres looked at my films in 2006 (He made 4 recommendations, with a transplant as the best option) and I tried to figure out exactly what it would cost to go there. I decided to talk to the Cleveland Clinic to see what they could do.
I hoped to find a doctor there would be in the PKD Foundation and maybe work with Dr. Torres's guidance, but they weren't. I don't think they ever did anything for PLD but a liver transplant. I went to the Cleveland Clinic in 2003. I left crying because a doctor told me he couldn't help me and that he knew the most of all the top liver doctors in the country and no one would ever touch me. Apparently he didn't know Dr Torres!
Back to 2006, in the late summer I got the Cleveland Plain Dealer newspaper delivered to my house under someone else's name. I live an hour from Cleveland so I didn't want it. I called them to tell them to stop it, then left the state for a few weeks for my new job. When I got back it was still coming every day. I called them again and said please stop this, I have to read all of them because I have them, but I don't have time to.
I suppose every thing happens for a reason is my belief. As I read through those papers I learned the Cleveland Clinic had a doctor getting an award for liver transplantation. His name was Dr. Fung. He came from Pittsburgh, PA a couple of years before that, apparently after I had been to the Cleveland Clinic. I called his office and he called me back that evening himself. I went to see him the day after Xmas in 2006 and my life changed again that day because he recommended a liver transplant. We started the workup soon after that and in June, 2007 I was listed for a liver transplant. If you look up my name Caputt in January, 2009 in the Polycystic Liver Disease Group archives you can read more of my story. My one year anniversary is October 14th, and am doing great!
What is in my mind as I am writing this is that maybe if you look very hard in your own area, you may find a doctor or center that will be able to take care of you just fine, using the recommendations from Dr Torres. I would get a tablet, list all good hospitals that you would want to go to, and start calling them. I would talk to GastroEnterology and transplant departments, finding out what knowledge they have of PLD. Keep notes from each one and maybe you will come across someone that has the knowledge and you are at ease with. I found out by asking Dr. Fung that he had done some liver transplants on PLD patients in Pittsburgh. Then after all that, he wasn't the one who transplanted me, you get the surgeon on duty. It worked out great! I was overwhelmed when I read all of the things I should avoid to keep my liver cysts from growing and I believe I may have taken the easy way out by getting a transplant. Now I don't have to watch anything but salt. And very sadly I have to avoid alcohol.
